As many of you may know, yesterday the House passed an act to repeal and replace our current healthcare system. Lots of people have lots of opinions on it, and have been sharing them freely on social media platforms. This post isn’t to necessarily give you my opinion on this act, so much as it is to share my story and parts of my story that are affected by the healthcare laws. Many of the things I share in my story are not easy for me to talk about, nor is it easy for me to know that these things are now public for anyone to read, but I feel it is absolutely necessary for me to tell this story in the hopes of helping, not only myself, but others who have similar stories.
Until yesterday, I had a hard time finding any recent news stories relating to the GOP penned American Health Care Act (AHCA). It seemed that many had forgotten about the GOP agenda to repeal and replace the Affordable Care Act (ACA), but I had not forgotten, because I cannot forget. It is a reality that I live every single day. Finding adequate and affordable health care for a chronically ill person, like myself, is by no means easy, but if the AHCA becomes law, it will become exponentially more difficult.
I have heard people respond to this with a clear cut “of course the sick should pay more, they use insurance more!” They seem to forget that we already pay more. We pay more copays because we have more appointments, we pay more for Emergency Room visits as we are often forced to find care there, we pay more for diagnostic testing (which is often done routinely, I pay $100 every visit with my cardiologist just for the EKG), we pay more for all of our prescriptions that we require just to simply stay alive. Without adding the cost of a higher premium and higher deductible, we already pay far more for health care than any average healthy able-bodied person.
We also have the added difficulty of making less money than most healthy able-bodied people. Those of us who are disabled by our chronic conditions find ourselves unable to work, or unable to work a sufficient amount to actually make a living, and yet, people are crying out that we should pay more for our insurance, as if we are all rolling in money, laughing at the able-bodied people who have to work jobs and don’t get to stay at home all day writhing in pain. As if we have somehow duped the system into letting us pay the same price for insurance as a healthy person so that we can use all of that extra money, not going to premiums, paying for lavish vacations and big mansions rather than using that money to pay for all our office visit copays and bills for what insurance won’t cover.
I’m sure some of you are thinking, “well, if you’re really disabled then you would collect disability, so you must be able to work.” In answer to that, I suggest you pop over to my earlier blog post 5 Things to do While Waiting on Disability to get an idea of just how difficult it is to get on disability. In short: the average wait in the US to get on disability is 2-3 years. 2-3 years! Imagine waiting 2-3 years to be able to have a regular income, all while being asked to pay more for the insurance your life depends on. A good portion of the US can’t even wait 2-3 years to get a new iPhone!
Why not go on Medicaid? A) because not all states have expanded their medicaid. For instance, in Georgia, to get on Medicaid you have to make under a certain amount a year AND be pregnant, over 65, under 18, or disabled. Hey, I’m disabled so…oh no, wait, that’s right, I’m still in my 2-3 year wait for the government to confirm what my doctors already know. Instead of receiving Medicaid, I was sent a lovely letter from the GA government telling me that I am exempt from having insurance this year. Woohoo!! Except, I need it to receive the healthcare my life depends on. So, instead, I pay more than I can afford and rely on the generosity of family to help me cover the prices of my premiums, while bills still pile up for all the things that my insurance already doesn’t cover (so remember to shop at the Spoonie Warrior shop, or use my Amazon links to help pay some medical bills! Yay for a shameless plug!).
B) the ACHA that just passed House cuts access to Medicaid starting as early as 2020 (should it pass Senate) and then will continue to cut the amount on funding each state receives, meaning less people will be covered. Less disabled people, less pregnant women, less children, less elderly, and less people without the financial means to cover the cost of healthcare. PEOPLE WILL DIE. This is not a hyperbole, this is the truth. I am very likely to be one of those people.
Now, some of you may be fuming by now, angry that you even clicked on the link to my “stupid liberal snowflake propaganda site” or something of the sort. Some have probably given up and stopped reading about one paragraph in. Some are still here because they feel this too, because they are also afraid and saddened by what happened yesterday. And some may just be hanging on for curiosity sake. I ask that you, no matter what reason you’re here for, stick it out and read on because you might just, “learn things you never knew you never knew” (yes, I absolutely just quoted Pocahontas).
In a recent interview about the AHCA and its views on pre-existing conditions Rep. Mo Brooks (R-Al) stated the following:
“My understanding is that it will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool that helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, you know, they are doing the things to keep their bodies healthy,” he said. “And right now, those are the people who have done things the right way that are seeing their costs skyrocketing.” (TPM Matt Shuham)
Well, Mr. Brooks, there are a few things that I would like to let you know about the choices I made in life that landed me where I currently am: disabled with multiple chronic illnesses that have impacted and changed every single aspect of my life.
(TRIGGER WARNING: I will be discussing some pretty personal things that aren’t so pretty or comfortable. Some of these things could be triggering to those with PTSD, anxiety, depression, suicidal thoughts, victims of rape & assault, the chronically ill, or other disorders not mentioned. Proceed with caution and know that I mean no harm to anyone. I just want to illustrate my truth as accurately as possible.)
Choice One: Birth
Actually, we should start before birth because, even before I was born, I had already made poor choices. You see, I have a genetic disorder called Ehlers Danlos Syndrome (EDS). EDS is usually passed down through families, but every once in awhile they will find someone whose genes have spontaneously altered, creating EDS without a family history. I seem to be one of those extra special people, as we can’t find a history of EDS anywhere else in my family. It must have been my desire to be unique that led me to making such a bold decision.
I was born in 1985, in a birthing center right in the heart of Georgia. When I was a week old I made the horrible decision of contracting pneumonia. This landed me in the hospital for what, to my parents, must have felt like years. I had to stay in what my grandmother described to me as “a tent to help you breathe.” I certainly hope that my parents didn’t pay the same amount for my insurance and care than the parents with smart well-behaved babies who correctly chose not to be close to death at only a week old. My naughtiness certainly should not have been rewarded!
I chose to be born to a working class family. We lived in a small house with one window unit for air conditioning and two vertical heaters in the hall. In the summers, my sister and I would drag our plastic Playschool chairs up to the air conditioner to help cool us off in the sweltering Georgia heat. In the winters, back when it actually got cold in Georgia, we would curl up on the floor in front of the heaters to stay warm.
We ate cut up hot dogs and baked beans off of paper plates cradled in wicker liners while watching TV on our television that must have been from the ’70’s because you still had to get up and turn the dials to change the channel. Being the youngest, this was often my job. We adjusted the antennas, wrapped in aluminum foil, to try to get the best reception for our afternoon cartoons. We played outside, running around the neighborhood like feral cats, returning home for dinner covered in sweat, grass stains, and skinned knees and elbows. It certainly had all the characteristics of a life that could easily be a good one, but I chose poorly, time and time again.
Choice Two: Childhood
Had I only decided not to continue my life into a full blown childhood, I would have saved myself the pains that I am suffering now. You see, even though I was born with EDS, no one yet knew that I had it. No one even thought to look. But my body knew, no matter what anyone else thought, which led to me being sick constantly and injured frequently.
I had chronic ear infections that led to tubes being painfully inserted into my ears. I caught strep throat at least 2-3 times a year, every single year. By the time I was about 7, my doctors had to stop prescribing the “bubblegum” medicine because I had already built up a tolerance to it. I often had stomach issues, once waking up drenched in my own vomit. As an adult, I learned that all this was probably due to an allergy to dairy. However, as a kid I made the poor choice to go to doctors that never even thought to check me for such an allergy, so I continued to get sick over, and over, and over again.
I also made the poor choice of suffering and enduring continuous childhood trauma. I am not going to go into the details of what this trauma was because, well, frankly because I don’t trust you with that information, Mr. Brooks. But it happened, obviously because of the choices I made. And this led to me developing PTSD, Major Depressive Disorder, and Generalized Anxiety Disorder. This choice led me to being suicidal through-out my middle and high school years.
Then I made the stupid choice of talking about it with a doctor who referred to my mental illnesses as “histrionics” and then told me to exercise more because I was getting fat. This same doctor, instead of looking to see if there was a deeper issue at play causing all of my frequent sprained ankles, knee dislocations, hip dislocations, tennis elbow, etc., decided that they were due to me not being fit enough. If I just lost weight and exercised more, then all of my problems would be solved.
Choice Three: Stress
We all have seen or read articles about stress – the silent killer. Oh boy, if what I listed already wasn’t enough for a stressful life, as I grew I continued to make choices that added to my stress.
At the ripe age of 18, I moved across the country to attend the school of my dreams. I worried constantly about money, since, if you remember, I was born into a working class family rather than the wealthy elite. Many wonderful things happened in my time in California, but there was also some not so great moments. One in particular that weighs on me as one of my poor choices: I was attacked by a stranger in a bar.
[TW] I was held down and groped, against my will, while I screamed and cried out, “please, stop! Please, please, no.” This interaction led me into the deepest and darkest depression of my life which endured for about two years before I finally found the treatment I needed to start healing. That was many years ago, but I am still healing now. I suppose that is why my assault will be considered a pre-existing condition, since I am still healing from the damage it, and the two years following, resulted in. Is that right, Mr. Brooks? Is that why I should have to pay more for my access to a therapist?
As I worked to heal from this trauma, I made the choice of taking on even more stress. I moved cross country again. I re-enrolled in college and finished my Bachelor’s Degree in Theatre. I endured abusive relationships. I got married. I had a baby. I got divorced. I received training for a job that I absolutely adored. I completed my Master’s Degree in Education with a focus on Montessori. All of these things added stress to my life at different times of my life, so surely they indicate a pattern of poor choices.
Choice Four: Being a Medical Unicorn
My partner and I like to joke that I am a Medical Unicorn. My cardiologist said something to this effect to me as well. We say that because most anytime a doctor has said to me, “we only see that in very rare cases,” I end up being one of those rare cases. I often feel more rare than the medical zebra, a term we cling to in EDS support groups, because even within my rare illnesses, I tend to end up in the even more rare percentile groups.
In December of 2015, I developed a debilitating case of Postural Orthostatic Tachycardia Syndrome (POTS). A small percentage of people with POTS become disabled. I am one of those few. A small portion of people with POTS have a special type of POTS that involves having an over reactive sympathetic nervous system. I am one of those few.
When I was 21, I had my gallbladder removed. When I was being wheeled back to the operating room, my well-meaning nurse said, “you’re too young for this.” Had my gallbladder been removed due to gallstones, it would have been unusual but not unheard of. Many people in there 20’s have had issues with developing gallstones. Nope, my gallbladder was removed because it just stopped working. It was functioning only at 18% at the time of it’s removal. That is pretty unheard of for a 21 year old “otherwise healthy” kid. I sometimes wonder what life would be like had I not made the poor choice to allow my gallbladder to stop functioning.
This past October, I had the privilege of getting a colonoscopy. Again, not common for people my age, but not unheard of either. However, the two pre-cancerous polyps that they found in my colon? Those are extremely rare to be found in the colon of a 31 year old. My doctor told me this after having removed them and I thought, “ok, unusual but I’m sure it happens,” so I looked it up. When I say it’s rare, I mean it’s really really rare. I found a few articles mentioning it in a quick Google search, but most were stating that it was extremely rare. Yeah, I’m a freaking unicorn.
I really wish that I hadn’t made that choice in life, though. I really wish that I hadn’t chosen to have pre-cancerous polyps. You see, having them doesn’t mean I will get colon cancer, my GI explained. As long as I get a colonoscopy every 3 years to remove any polyps as they grow, my condition will be perfectly managed. Without the regular colonoscopies, I will most certainly develop colon cancer by the time I’m 50 (at least, that’s the estimate my doctor gave me).
Colonoscopies aren’t cheap, especially when you have other conditions that mean you require special accommodations both before and during the procedure. But they are the only thing keeping me from developing a deadly cancer. A cancer that I watched take my uncle’s life. One that is completely preventable for me, as long as I have affordable access to regular care.
If you are still with me, hopefully you have picked up on my sarcasm that bleeds through the words on this page. If you missed it (I’m looking at you Mr. Brooks) let me break it down for you:
I am not responsible for my disability. I did not choose to be disabled. I did not choose to have a genetic disorder. I did not choose to have multiple chronic illnesses. I did not choose to endure trauma, assault, and abuse in order to create complex mental illnesses.
Let me make this as clear as possible, all the good choices in the world would not have prevented my illnesses or my disability. I should not have to prove my worth to you. I should not have to prove my right to exist to you. And I should not be financially penalized purely for my existence.
I am NOT a burden.
I am a mother. I am a teacher. I am a student. I am a partner. I am a daughter. I am a sister. I am an aunt. I am a friend. I am a writer. I am an artist. I am a believer in good. I am an optimist. I am a force to be reckoned with. I am as fierce as I am kind. I am a bleeding heart who carries the burdens of the world on my shoulders, as if it were my job alone to save it. I am a US citizen. I am a world citizen. I am a human being. And I have a disability.
I will not be brushed aside, Mr. Brooks. I will not be forgotten. I will not be told that I am less deserving of human decency because I wasn’t built the way you would like for me to have been built. I will not apologize to you, nor anyone else, for my existence. And I absolutely will never stop fighting for disability rights to be seen as human rights.
With that, Mr. Brooks, I conclude my case. However, I would absolutely love to hear from you so that I can tell you even more about how ill-informed and misguided your words truly were. Feel free to contact me at anytime. I always have time to correct misinformation.
For my readers, if any of you made it this far, please, feel free to share this with your friends, family, crazy neighbor across the street, senators, and congressmen. Yes, I do plan on sending this to Mo Brooks. I also hope to get it to as many Senators as possible to help inform their vote as they review the AHCA that the House recently approved.
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